I've had enough

dorri,

I can only imagine how frustrated that you are. You certainly have every right to be. Your GI seems to be of the opinion that the Entyvio will kick in sooner or later, so just tough it out until then. I have no experience with Entyvio, be the consensus does seem to be that it takes quite a long time to reach a therapeautic level required.

I would tend to agree with your Husband, and ask for at least a short course of Pred. I would also inquire to managing your strictures. You could possibly be able to have them stretched with a scope at the very least.

If things don't change soon, I would strongly consider 2 things. First, a second opinion or new GI. Second a transition to another anti-TNF. Have you considered Stelara. There does seem to be much better reviews with Stelara over Entyvio, but I don't have experience with either.

Hope you get things under control soon. Wishing you well. Keep us posted.

Doc should measure your blood inflammation (crp) and intestinal inflammation (fcp- from stool test) to see whether it’s reducing your inflammation levels because that is going to indicate whether the direction of travel is the right one

I was on Entyvio for 2 years, the only thing it did was give me a little bit more energy. My crohn's ulcers remained the same, my inflammatory markers (CRP) still high, did nothing for the loose stools and cramps, I'm sure it works for some but not for me. Remicade did nothing for me either. I recently participated in a clinical trial for FMT (fecal matter transplant) for which the results were nothing short of astounding for me. Normal stool, no cramps, my CRP went from 270 to 17 (normal) blood and stool measured, I feel like I don't have crohn's for the first time in 25 years (and that's after 3 bowel resections). Just thought I would pass on my experience. Where I live (Canada) there are 2 chain labs that allow you to see your lab results online (one, Dynacare Plus cost about $60/yr, the other, Lifelabs free), I think it is invaluable for me to see my lab results as doctors tend to think we don't "need" to know, but it definitely gives me a more complete picture of my health.

Our disease progression seems to be very similar, I know what you have gone through, particularly with the leak at the anastomosis (on my 3rd resection as well). The fecal matter transplant was a clinical trial (experiment/test) to see how it would work for crohn's, I have never had C-Diff (tho I know right now this is what FMT is mainly approved for use for) and as I said the results were astounding for me, with regards to my crohn's, even with the resections and short gut, it was the change in my microbiome (gut bacteria) that worked for me, and it was fast, within a week. I went from loose watery stool, cramping, feeling crappy to normal stool (for the first time in a long time), biologics did not work for me. I too have taken cholestyramine, it is a bile acid binder (needed because of the resections), nothing to do with reducing inflammation and did slightly improve stool for me. I too had my ostomy for 1 year, then reversed. I developed joint and muscle pain, to the point I had trouble walking, was checked for arthritis, that was not it, it was a lack of magnesium caused by short gut, which resolved completely by taking 2 OTC magnesium glycinate capsules a day plus calcium, caused by malabsorption issues by lack of ileum (ask your doctor about your magnesium levels, another reason to be able to see your lab results). Also please google oxalates/crohn's/short gut, you need to be eating a low oxalate diet. If there is any way you can get into a FMT clinical trial for crohn's (not always easy/available) I would highly recommend, that is just my experience tho, wondering if you have had much antibiotic use in your life?
I also take a B12 shot once a month (due to lack of ileum), my vitamin D levels are so low (malabsorption), normal vitamin D recommendations are useless and my doctor prescribed 50,000 IU a week for month, then 50,000 IU a month to bring it up which helped with energy. I haven't found any particular diet helpful but I find eating low carb, low gluten uselful for loose stool, tho I am not strict about it.

I think it took me about 4 months to feel like Entyvio kicked in. I hope you'll notice some improvement soon.

From my own experience I'd say pay attention to any sinus or joint issues. I noticed continual problems with both. I'd get a cold and then it would settle in my chest and I'd be congested and coughing for weeks. I also had increasing joint pain. Eventually the joint pain and fatigue after the infusion got to where I couldn't take it. Fortunately entyvio did put me in remission.

I finished the FMT clinical trial for crohn's about a month ago. There was a hospital near me and my gastro was involved with (most are not and know little about FMT for crohn's, the trials are rare) the trial and since there was little left for me to try and I qualified he enrolled me. The whole trial is an experiment to see whether FMT might for some be a viable option for long term crohn's treatment, like biologics it might work for some, not others, I am simply relating my experience here. I went to the hospital for about an hour once a week, the first fecal matter transfer was by colonoscopy (by far the most effective) and then 7 more weeks of (an hour visit) to swallow 20 FMT pills/wk (in an office, pills didn't seem quite as effective but still good), stool, blood, urine, weight tests, questionaire about eating. It was a "blind test", I could have either received FMT or a placebo (water) in the trial, if I had received the water I was eligible after the trial to automatically receive the FMT. I knew after the first transfer (via colonoscopy) before I left the hospital that day that I received the FMT (I could feel it, gassy/bubbly etc..), the next day and the next week the effect was immediate and amazed me. To check if there might be a clinical trial for crohn's near you (this covers U.S. too) https://clinicaltrials.gov/. They do not know if I will stay in remission (first time ever remission except for right after resections, even then I always had diarrhea and pain. I generally don't "flare" like others, (I always/continually have ongoing med.grade disease progression until my bowel becomes completely blocked) or if the FMT effect will eventually wear off in a year or so as I can only receive this through clinical trial and it is not approved for wide use for crohn's or anything but C-Diff yet. They recommend not doing do-it-yourself FMT at home (for a variety of safety reasons, the most pressing is the screening of donor feces) but the procedure is all over the net, relatively easy and had such a profound effect for me I may risk it (I don't have many options left, and don't believe I have enough small bowel left for a 4th resection), at this point if I am told that if I stand on my head and eat a lizard and I find it works for me, I am not only standing on my head eating a lizard but hunting down his family to eat also in order to gain some peace, body and mind). I am not currently on any other crohn's medications and feel great. I have been on codeine, cipro/flagyl, budesonide, Remicade, Enytvio, as well as various supplements (including probiotics), none of which really worked for me. It was the 2x day magnesium glycinate pills a day that completely got rid of my joint pain, not the vitamin D, ask your doctor about your magnesium levels to see if this might be your problem also. Any sinus issues I had, had to do with the codeine. I do have short bowel from the resections, what you describe sounds a lot like me. My last resection (3rd, followed closely by 3 more surgeries to correct the anastomotic leak and complications, I was hospitalized for 2 months and almost died twice, I totally get how frustrated and mentally drained you must be (not just physically), a lot of your experience sounds very similar to mine and while I am feeling great right now, (and I have actually had periods in my life where I just tried to ignore the pain and diarrhea and other complications and just get on with life/job), regular bowel movements and all, its very recent and I too just wanted to live a somewhat normal life with little pain, little diarrhea, and with some mental peace. I sincerely hope you find some peace, some way, with your body and mentally, this is an absolutely brutal disease for those who have it severely.

1+1=2, thank you so much for the information. As I was reading your story, I was brought to tears because it is so similar to mine, and I think you even had it worse than I? The 20 FMT pills you had to swallow in the following 7 weeks of doctor's office visits,, is that 20 pills per visit, are they horse pills, LoL. just asking because I have a problem swallowing big pills. I still haven't found the clinical trial they were having here, maybe a year hasn't passed and it 's still in progress but if I find it, will try to post a link here.
Glad that it worked for you.. If you don't mind me asking, do you have crohn's in your small intestine (ileum) or large.
Is the FMT specific to one or the other? I have crohn's of the small bowel, but having problems mostly at the joint of the small and large which is prone to scar tissue and stricturing? Wonder if I would even be a suitable candidate for this kind of treatment.?

Straydog
Thank you for your response, so far my suggestions to him aren't really taken into consideration? about 4 years ago, I was presented with Entyvio and while I was researching it, the doctor went ahead and set it up but I cancelled out. I was scheduled for surgery and to me it just wasn't the right time, also I was questioning it's affects on the liver at the time?. He was quite upset with me and let me know. I switched doctors but the new one retired a year later, and my family doctor ended referring me back to the same one I had before since there was a shortage of GI's at the time?. By the time the referral went through and the wait time for an appt, I was without a GI doctor for almost a year. He put me back on Entyvio and this time I was agreeable to it because I was pretty sick and was desperate for help and figured because it was organ specific it would be okay? At this point I am unsure of what I think?. I know he is trying to help me but he does have a different approach from the Dr. that treated me for years, who also retired? He doesn't feel the joint pain and the nose issue is connected because he says the drug stays in my intestine? Yes, they are listed side effects in the Entyvio information booklet. I think he knows, but if I show it to him he may feel I'm undermining him? I can't prove that Entyvio does cause my problem,, but these issues have come up in me with the ongoing nose problem since the start, (it is easing up but still there) and the joint pain started with my last Entyvio treatment aprox a month ago after my 4th treatment. Because he said my CRP are coming down, he said entyvio is working, but I don't feel it? I've still hoping for some positive change where I can say, hey, I feel alright, but maybe this is it? If I decide it isn't worthwhile, I will ask him to go with FCT or with Stelara next.

No! insufficient Vit D does not cause crohn's. There may be other factors involved living in the North that are contributing factors besides a lack of sunshine (Vit D)? Were we live, is sort of half in half. Our winters start early, our Springs are cold and have snow melts. but people don't really start crawling out of hibernation until the mid to end of May .. So that gives us June, July and August to enjoy the warm and hot summers, but with Sept comes frost, cold weather, sometimes early snow and then the winter like weather begins all over again. All is good if a person is a snow bunny and enjoys the cold of winter, they may get enough Vit D especially if they are healthy/ I need about 50 lbs of insulation, LoL I do get monthly B-12 shots, but no one really told me to take vit D. Guess that can't hurt either.?
Is the calprotectin test a blood test? It's new to me. Have to see if it's on my Lab sheet? Thank you for the info. Oh, I am working to set up DynaCare Plus. Do they give you copies of past tests or just the most recent? It would be so informative for me to know what is on my blood work? Sometimes they say it's normal but when I inquire more, I find out I'm just skimming the border line.

Dorrie, the fecal calprotectin test is a stool test. It measures the inflammation in the intestines, this is why my gi will only use it, intestine specific.

If you are taking cholestermyne for bile salts, ask for Welchol. A lot of people get better relief with Welchol over the other.

Are you located in the states? I can't tell by your post. I had an emergency small bowel resection while on vacation out of the country in 02. After coming home I could not get a gi to help me at all. They said you had surgery you no longer have crohns! It took me 2 years & 4/5 gi's later to find a dr that would listen & wanted to help me. By the time I got to him I was in horrible shape, in fact, he had me file for Social Security Disability & I got my benefits within 6 months. I live in a very large metroplex with plenty of gi's & found him through an nurse.

This is why I urge everyone to advocate for their medical care & do their homework about the medications used to treat. I am sorry that your gi is such a jerk & you feel that you are stuck with him. He is sounds like one of those that it is his way or no way at all, that is not a good dr.

It sounds like you live in an area with a lot of cold winters. Try getting some vitamin D3, take the recommended daily dose, it will not harm you.

You are correct about the FMT, they have success with it for treating antibiotic resistant C-Diff. I know of no one that has had any success with crohns. The trials are not new Dorri, they started them several years ago & not much happened for people. If the success rate was high enough this would be used as a main treatment also.

Keep us posted.

Stray Dog: you are wrong about FMT for some crohn's (and it may not work for all, just like biologics). The reason you haven't heard of it for crohn's is because the trials for it (unlike for C Diff) are brand new, cutting edge. The hospital where I received it is at the forefront for developing new strategies for crohn's and the clinical trials for it for crohn's are just starting, I got in on the ground floor. It is not approved yet for treatment because.....they have to do the clinical trials first to determine if safe and effective and yes, you have met someone who has had success with FMT for crohn's, me, there are many others in the clinical trial I participated in that also had success.
Dorrie: All of my crohn's disease has been in my ileum, none in the large bowel. My crohn's ulcers generally
re-occur around the site of the anastomosis, my original site is similar to yours. My vitamin d was low because of absorption issues due to resections not crohn's and will have no effect on treating crohn's but will help your body. Calprotein tests are used to determine inflammation (an indicator that your crohn's active and how active), there is a blood test (not very accurate) and a stool test (much more accurate) for it, I had both during the study. In my experience I could literally tell in my body while receiving the FMT that my inflammation was receding. I'm not pushing FMT, just stating what worked for me and if in the future you have a change to participate if I were you I would consider it, just keep your eye out for one near you. The 20 pills/week I took are fairly large so you might have a problem tho as I stated the most immediate and greatest effect I received was with the initial FMT placement by colonoscopy. I know exactly what acid butt burnout is, the only thing I found that helped in the slightest was the codeine (helped slightly) and not eating gluten (tho have never been diagnosed celiac), not the imodium, lomotil or others I have tried, other than that I just lived with it.

dorri said...
Thanks,. Well I am at the full 4 months, my doctor feels since Entyvio isn't systemic so my joint pain and runny nose issue isn't from that? I'm hesitant to tell him anything new because he will just say it's not from that? I see that you didn't remain on it. Hope you are doing well and have found another way to treat any flares? I read that Crohn's and inflammatory bowel disease is higher in the Northern hemisphere where Vit D levels are lower, I don't know how much truth there is to that, since I'm a sceptic after trying so many supplements, but since I never gave it a good try, will try it again? It may help the joint pain. Just curious, after you stopped the entyvio did the joint and sinus issue go away? I heard if you've been on it for a while that it takes a few months to completely clear the system.

It took a couple months but the sinus issues and joint pains cleared up after I stopped Entyvio. I hope you'll start feeling like the Entyvio is working. It's so slow! My GI told me the same thing that it wasn't the Entyvio causing those problems. He wanted me to try one more infusion, but I wound up with another "cold" and didn't go. He's not the best at listening to me. I think I am fortunate that I've got a mild/moderate case of Crohn's and my biggest issue is having reactions to most of the medications. I've stayed in remission so far. I do monitor my symptoms closely and will try Stelara once I flare again.

I take turmeric and fish oil supplements and have found those helpful with joint pain and general inflammation. While I take vitamin D, I don't know if I have ever really noticed a difference. I go in cycles. I get tired of trying supplements and stop for a while and then try again.

Take care!

Yes, my Crohn's is mostly in my SB. Once Entyvio kicked in I felt pretty good. about 10 months in I had a scope and it showed no signs of an active disease. It was the first time I was in clinical remission since being diagnosed. I got really close with Cimzia, and was at least in a symptomatic remission for 5 years.

It is tough waiting it out. We all can react differently to medications, but it's nice to have some place to compare and share notes. And like you said know you aren't alone.

sparkleplenty and others, do you think there is still hope for me remaining on entyvio, and that it may still kick in and work on the diarrhea, and I will feel the affect. I will be going on 5 months soon?

Straydog, thank you, I feel like I have crohn's in my rectum; Previously there was a post up on the crohn's Forum with someone saying that Lidocaine helps with itch and swelling and burn, so I asked my GI for it. He told me to use Vaseline instead . Just like you, I tried absolutely everything on my sore butt, Preparation H, Penatene, Anusol ACV. antibiotic cream, fungal ointments, witch hazel, butt barrier cream (which did nothing), Lanacane, Aveeno and even plain yogurt. I will definitely look for calmoseptine

Seems the horse pills I get, with my luck can't be cut down. I do have a pill splitter